Mothering a special kid can be lonely and then sometimes it isn’t.

My dreams for the baby growing in my belly were the same as any other woman who has had the opportunity to create life.  I wanted happiness, success (in whatever form), friends, health, love.  Having an autistic child in our family did add a touch of worry.  I saw from a state away the toll it took on my cousin and her family and I wanted no part of it.  Fast forward a bit to a colicky baby who ends up in the ER on a ventilator before he’s four months old and then to an 18 month old who would bang his head on our tile floor repeatedly and so hard that I would call the doctor in fear.  Diagnosed with PDD-NOS (no longer an official DSM diagnosis but just means he tested on the mild side of the autism spectrum) at 2 years old, I was thrown from an already stressful place to one with more unknowns and burden than I’d ever known.  I cried every day, I read books and blogs, and saw doctors with a boy who could not sit still for even 10 seconds.  I was lost.

Jason and I had Gage late.  I turned 39 a week before he joined us and none of our friends had kids.  Okay, not true, we had two friends with kids and one had just moved back to France and the other we didn’t see more than every few months.  I had friends stop by in the first year, and Gage’s constant need for attention (not unlike many one year olds) limited my real-time with them. As I took Gage out to more public places we made some mom and baby friends and that was nice.  But Gage did need constant supervision and redirection.  I liken this more to an ADHD thing than to autism (not formally diagnosed, but that’s just a formality).

Fast forward two years and here I am still blogging even though I do not have time for it.  My day consists of getting him to school and two therapies, even on weekends.  I also need to find the right therapies (if any), therapists and schools and a way I can schedule them all.  After two years of the traditional therapies (ABA, OT, Speech, Social Groups, Swimming) I have dipped into the biomedical field more which means more extensive research than I ever thought this girl who hates science would ever see again.  Here I am at 1 am just finishing a 4o minute online conversation about the new supplement his DAN Doctor wants him to try.  I turned to a group of fantastic women who have tried everything and are willing to share their successes and failures.  Over 9,000 women in a closed group fighting for their kids.  I am still learning and reading and stressing and worrying.  For the first time we’ve found a probiotic that Gage can tolerate and the past few weeks he has been a happier, chattier guy.  That’s what makes it worth it.

I’ve had to go doctor searching in a way that parents with typical kids never will.  I have had to withstand questions on parenting choices and try not to alienate anyone who can help Gage.  I’ve been/am consumed.  It’s no surprise that a study showed that 80% of couples with special needs kids divorce.  To be honest, I consider date nights, even if it is just dinner and/or a movie, as therapy for Gage even though he’s home with the grandparents. He needs Jason and I to be united and loving and that is just as important to his  well-being as playing with his friends in social group.  But I am also the one who has to schedule and plan for these date nights/therapies.  I pay the bills (mostly on time), I clean (as little as possible, but still), I cook and do the grocery shopping for a dairy-free, gluten-free, mostly soy and GMO free kid. I basically keep this place running when Jason is at work earning the money for all of these doctors and therapies.  And all of this is on top of dealing with whatever crazy thing autism brings into our life that day, sometimes smiles, occasionally aggressive tantrums.

I’m not friendless, but I have little time for the friends I have.  And the ones that I had before, while still loved and appreciated, are so far removed from what’s going on.  My real life tribe consists of the moms I meet who are doing the same things with their kids as I am.  We get each other.  We get the daily struggles and stress, but we also understand that our time is not our own so often we sit with each other during therapy and send the occasional text or email until we see each other the next week.  I love these moms but they are just as depleted as I am.

All of this to illustrate why the book blogging community can still bring me to tears.  I know my mind, that now runs in 100 different directions at once, isn’t fully available to blog.  I keep doing it because it’s something I can do on my own time (ie the middle of the night) and I genuinely love the women that I have met over the past seven years.  The quality isn’t the same but the affection and friendship I feel for all of you who take the time to comment or email is so much more.  Last week, in the span of two days, I received THREE packages for Gage.  A Lola book from Kathy, two Texas books from Kay, and four atlas books and a gazillion stickers from Jill.  The support from you warms this mama’s heart and brings a happy tear to her eye.  Thank you for letting me share Gage with you and make up silly quizzes and write a little about the books that I still manage to read.  You are all a part of my tribe too and I appreciate each and every one of you who takes the time to stop by and say hi.  Thanks for bringing bookish friendship into my busy world 🙂


24 thoughts on “Mothering a special kid can be lonely and then sometimes it isn’t.

  1. Lloyd Russell says:

    And thank you for giving us some insight into your life. For those of us who haven’t experienced living with an autistic child, there’s no way for us to understand what you and Jason go through. This helps a little. Your commitment to Gage is truly inspiring. And I’m pretty sure that, like me, your fellow bloggers look forward to your posts – whether they be about Gage, books, or movies.

    • stacybuckeye says:

      Thank you Lloyd. And I apologize that I said ” I genuinely love the women that I have met over the past seven years. ” Obviously I meant women and Lloyd 🙂 Gage made you a card over the weekend so hopefully ce can get that in the mail soon.

  2. Kay says:

    Oh, Stacy, you made me cry. And I don’t cry easily. I can’t even begin to understand what you have going, but I do support you and Gage and Jason and hope that you will continue to check in with all of us. We do care. And I love rootling around and looking for a treat for Gage. And I’ll continue to do so. Love your quizzes. Love your book reviews. And especially love your Gage updates. Wish I lived closer and could do something more substantial. You take care of yourself – Gage only has one Mommie. Big, big hugs.

    • stacybuckeye says:

      Thanks Kay. The taking care of me part has been the most neglected part of our family thus far and that’s got to change. You are just as sweet from states away as you would be right next door 🙂

  3. Literary Feline says:

    What a beautiful and heartfelt post, Stacy. I wish I lived closer so I could give you a great big hug. I won’t pretend to understand everything you are dealing with. I know it can’t be easy. I love how open and honest you are with your feelings and experiences–it is refreshing as well as reassuring.

    I am glad you have found an outlet in blogging. I think, as parents, we all need something for ourselves.

  4. Mary says:

    Ditto what Lloyd wrote. I’m always happy to read your posts when they come through my reader. Know we’re all out here cheering for you, Jason and Gage – and sending good thoughts.

  5. Tara says:

    Beautifully written, Stacy. Just beautiful. I have distant acquaintances with moms of autistic children, but having never fully experienced it for myself, I cannot fathom what you must go through on a daily basis. I love reading about Gage. No matter what his diagnosis might be, all I see in your posts is a little boy with amazing parents. You manage to make autism real to those of us who don’t live with it day-to-day. And I’m so glad that you are able to keep going with your blog. I know how hard it is for me to keep up with my blog. I keep telling my husband I think it’s time to hang up my blog, but then I am reminded through posts like these that without my blog I wouldn’t have “met” all the wonderful, beautiful people that I have. And I would so miss that. Keep coming at us with whatever you and Gage have … I know I love ever moment I spend reading it 🙂

    • stacybuckeye says:

      Aw, you are sweet Tara! I appreciate your kind words, they even made me tear up a little. Gage is great and in many instances can pass as typical so I am blessed. But there are months that we take two steps back and they are dreadful. I just wanted to share that with all of you. I’m sure I’ll go back to my positive posts soon 🙂

  6. Care says:

    Yay! and CHEERS and {{{hugs}}} and all it. I am glad that you blog and the very personal sharing. I also love that you are binge commentor; I need to do more of that, too, I know. But hey – no ‘Have Tos’ in blogging, right? Just feel and share the love in whatever way works.

  7. farmlanebooks says:

    You’re so lucky to have a group of supportive friends. My oldest son has Aspergers so I know what you’re going through. I found that most people don’t really understand how hard it can be raising a child with special needs and so I’ve lost many good friends over the years. Those that are still around are so special because they get it. I think blogging is also a fantastic distracting from the traumas of real life – probably one of the reasons I’ve been blogging for so long. I hope that blogging continues to give you all the support you need and that things get easier as Gage gets older. ((HUGS))

  8. BermudaOnion says:

    You are a warrior mom so I have no doubt Gage will flourish! I know it’s not easy and can take it’s toll but I’m sure the payoff will be worth it. I wish I could deliver a book in person and give you a great big hug!

  9. Rita @ View From My Home says:

    I missed this post when you first wrote it as I was on hiatus while traveling cross-country, but searching your site about Gage I stumbled upon it. Remember, parents of special-needs children are NEVER alone. We are a community joined by our shared experiences and we have each other’s backs more so than parents of “average-development” kids. The underdogs are always the most driven team and can actually be the most positive. So remember, Stacy, you are a member of my team and I’m glad to have you with me 🙂

  10. firmfam4 says:

    Stacy … I’m going through some posts in Feedly and I’m sorry I didn’t see this when you first wrote it. I completely, 100% get this. You are me when my boy was 4. Those were some of the most stressful days of my life. His diagnosis is officially Aspergers, but like you, we went through the whole PDD-NOS, autism, etc. route. Did the GFCF diet and nearly every therapy possible.

    My boy is 13 now. While things aren’t perfect, he’s come so far since what I refer to as My Black Hole Years – because that’s where I felt like I was living. In a black hole. It’s not a fun place to be.

    You can – and will – find your way out of this time. I never used to believe people who would tell me that, but I swear it: you will.

    Feel free to email me or be in touch via my blog if you wish to talk more.

    (And I promise to pay more attention to the blogs in my feed!)

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